The Eyes Have It (revisited)

Way back when I wrote on here that they came to have a look at Jude’s eyes, they told us that the nerves that process what he sees (I think) were a little light or pale – I meant to ask if this was in reference to their colour of lack of number but forgot. Whatever, they are not as they should be.

So we went for our follow up appointment and we’re told…….. the same thing again. We’re probably not going to know one way or another what problems Jude may have with his sight, a few years before anything definite and in the meantime we’ll probably know as much as anyone else, maybe more.

At least we’re on the treadmill of follow up eye appointments but it did seem like a waste of everyone’s time – time I could have spent completing my spring cleaning.

As an aside, he managed to ‘throw up’ his tube again this morning – we’ve decided we’d like to learn how to put it back ourselves. The community nurse reckons the hardest part is the thought of actually doing it and I think she’s probably right on that one. I might have a practice on myself first…..NOT.

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Poorly Jude

Looks like just as Jude walks through one door he walks into another one. The feeding tube just doesn’t want to stay in at the moment and he ‘sicked’ it up again this morning. Off to the hospital and they think he may have a chest infection – that would certainly explain why he’s been off colour the past couple of days.

One skill Jude has had plenty of time to master is feeling miserable and letting us know – but at least this is ‘normal stuff’.

It was his very last dose of Prednisolone today and still no sign of any seizures. It’s wait and see know, hopefully this last few months is firmly behind us. Jude’s therapy is starting to increase and it would be nice if we could concentrate on that rather than the other. Next up is some time in the sensory room and the hydrotherapy.

Little steps.

Jude Update

Another uneventful week…..not.

The young man is started to find out what his hands are for, which of course is very good news. Not content with spectacles, necklaces and clothes he has also found his NG tube.

I was away for work Thursday night and Jude took the opportunity to display his new skill by pulling out his NG tube during the evening. This meant a trip up to the hospital to have it replaced. On the way home it seems Jude decided a little bit more practice was required so he pulled it out again! It is now taped to his back, let’s see if he can find it now.

The Physio and Occupational Therapist paid a visit earlier in the week and seemed content with the progress he’s making and on Tuesday we have his first major eye test.

It is beginning, slowly, to feel like we have a baby in the house instead of a patient. Long may it continue.

And the doctor said……

…….not bad.

Sometimes it isn’t what’s said but how it’s said. I can still recall the solemn look on the consultant’s face when she first delivered the news that Jude had IS, and the same look when she told us the results of the MRI. In total contrast, the mood today was quite upbeat. Jude’s tone has markedly improved, head control was better, he pushed himself up from lying on his front, he was much more alert…. all these things we knew but it’s nice for someone to confirm that this is all good news.

Some slight adjustments to his medication to take into account his weight gain and we’re off again and another 8 weeks before the next appointment.

Other than in the consulting room he pretty much cried everywhere else – but that’s quite typical for Jude!

In perspective

Jude has pretty much given up on the bottle now and more or less so have we – sucking on a bottle is not generally considered a key skill growing up and the hour or so it takes to struggle getting a bottle down him is wasted time and he does seem to enjoy his baby food more. We’ve decided to see the NG tube as a means to an end for the time being.

It is back to hospital tomorrow to see the consultant – always a time for a little trepidation even though there appears to be nothing on the horizon these appointments have had a capacity to surprise in the past.

We’re into the last 2 weeks of prednisolone and (fingers crossed) still no more seizures – after so much going wrong so often in the beginning the recent run of good news helps build confidence. We’ll let you know how it goes.

He’s still smiling…..

A captured smile

There are rare animal species in the Amazonian rain forest that are easier to capture on film than a Jude smile – he smiles, sees the camera and then………nothing. But, this morning he just couldn’t hold back.

For parents, that first smile is a really important moment, it is a sign of the developing relationship between parents and child – I’m not sure whether we are fortunate but with Jude there have been a few ‘first smiles’ to celebrate. Those chunky cheeks are medication related, honest! There was much cooing accompanying these – it’s hard to believe that a few minutes earlier he had been screaming his heart out.

And finally, the trademark shot….

Another photo

Joseph and Jude Marrey

I thought this was a nice photo to share of Joe and Jude being all brotherly.

Jude has been weaned off his Vigabatrin now, just the Prednisolone to go , another few weeks of that and he’ll be almost drug free.

Tried a few hats on him today (the sun is shining) but because of his small head most of them covered his face too – he was not amused….